Don't look a gift horse in the mouth.

That's the phrase, isn't it? Well, I have been feeling almost like a real human being the last 2 days. I've had energy, a smile on my face, been able to accomplish tasks with a fairly normal amount of effort and it has been fantastic. I know that good days will come and go, but when they are here I am beyond grateful for them. I haven't felt like myself in so long. I kinda missed me ;-). I have been told by other Lyme sufferers to cherish the good days, not to overextend myself and to remember that the really bad days are often followed by these better days. I started a new medication this week. It's a medication used for Rheumatoid Arthritis, Lupus, and Malaria, among other things. It is supposed to help with inflammation, degeneration and joint pain. I thought I read that it can take a couple of weeks to build up in your system, so maybe my feeling better is a coincidence. Whatever the reason, who needs to know why? I'm just grateful for it. Today Ivy called me and noticed instantly from my voice that I was feeling better. I had no idea I was so obvious. Or maybe she just knows me that well. Possibly both.

Ask and you shall receive... So, the last several months I have spent an absurd amount of time in bed or on the couch. I watch a ridiculous amount of TV and movies. I read when I can, but the headaches, concentration issues and eye sensitivity can limit that. I try to choose shows and movies that are educational or at least thought provoking. For example, The Tudors instead of Days of Our Lives. It has historical value, even if not totally accurate. I find myself looking up historical facts and gaining an interest in other historical material. I have an old, giant box of a TV. These days it looks like dinosaur age technology. It's the kind of TV you probably couldn't pay someone to take away, but it works. I've been saying that I want a bigger, flat screen TV, but how am I gonna do that? I can only work a limited amount and don't exactly have the big bucks rolling in. I talked to my brother about buying me one and letting me make payments and we were researching possibilities. I figure as much time as I spend now in front of a TV, it would be a nice investment. But, obviously not necessary. So, I sent the word out to the universe that it sure would be nice to have one. Why not try a little manifestation? Can't hurt.

Two days ago, I got a check in the mail for an overpayment I made to Urgent Care several months ago for one of my "flu" visits. I figured I could use this money for something a little fun. You can't only buy medications, supplements and pay bills, you know... so I set it aside for something special. Yesterday, I went and had my first auction experience. Oh dear. I loved it! I am becoming my Mother. They say it is bound to happen. Guess what?! There at the silent auction was a 42 inch Sony HDTV. I bid on it and WON! Yay. It's enormous and I love it. $75! I think other people were worried it wasn't going to work, so only a couple of people bid on it since they make no guarantees and offer no info. I, however, with the help of my friend Mary had done an undercover operation. We found an extension cord and plug and tested it out, unbeknownst to the other auction goers. I also found a nice young man who worked there and asked for any background info on the TV. It came out of a huge, nice estate and wasn't just someone trying to unload an old TV. It was less than 5 years old. So, I had the in (and I was not going to share the intel with the other auction goers.) I figured they could do their own investigative work if they were as interested.

(Okay, side note, I could not think of how to spell unbeknownst and looked online with a very terribly spelled version of the word and was led to this-)

http://www.urbandictionary.com/define.php?term=unbenounced

LOL! I had to share even though I'm embarrassed that I spelled it that way. I'm kind of a spelling snob, so it serves me right.

So back to my happiness. I got a big HDTV just like I asked for. My surprise check in the mail covered half of it. How exciting.

I kinda look hunch backed or something in that picture. Oh well. I even had the energy to hook it up and get it working. Now I'll need to work on are the picture settings. See, ask and you shall receive.

I'm still weighing my treatment options and deciding whether or not to put the port and pict line in sooner than later. I'm also researching my doctor switch. I've had some suggestions, but all are out of state. One that looks quite promising is in Seattle. Wouldn't that be interesting if Lyme relocated me to my beloved Emerald City?

So, I don't know why I'm getting these good days, but I don't care. And if I collapse, I have a beautiful TV to watch my movies on! All in all, it's a good day. Thank you to all who have reached out with sweet and encouraging words. I had 3 e-mails from kind people I went to school with after my last post. It means more than I can express properly.

Let's all use our flashlights....

One of my best friends created a donation site last night to help me with all of the medical bills coming my way and living expenses. I am still pet-sitting, but have been unable to work at the hospital for the last couple of months. The treatment is about to get more aggressive and I fear that I may have to take a sabbatical from my pet sitting business as well not so far down the line. I am so humbled and touched that she would do this for me. A friend of our's, Matt, is the one that gave her information on how to set it up. Matt's brother has had several brain surgeries and their family is currently raising money for his expenses. I was amazed that during such a difficult time of his own, he would reach out to me. My struggles are nowhere near what their family is going through. The heart of some people is exquisite. Then, I woke up this morning to find an e-mail from a friend who has opened an online store and wanted me to know that she'd be donating a percentage of summer sales to help me out. Astonishingly beautiful. How amazing it is to have such beauty in my life.

I can not help but repeat my latest mantra, the shadow teachers are often the one's that reveal the most light.

I think of a pitch black cave or room and the light that comes through the cracks is brilliant and bright. I see our struggles the same way. Who can focus on the darkness with such brilliance shining through the cracks and corners? It at least can shift your focus. I have been struggling lately with my mind, heart, health, the world, the unknown, etc. Our world seems to be going crazy at warp speeds. Almost everybody I know is or has someone close to them going through abnormal hardship. The oil spill is devastating. It's best to keep the news off, unless you want to hear awful tales of discontent and awful intent. I've been reading a book about the Lyme epidemic and some of the players and it's heartbreaking. I can accept that an accident occurred and people got sick, but I can't accept that there is true malice in the world. Let alone malice created by sheer greed. Years ago I read "Conversations with God". In it he expresses the idea that there is no source of darkness, only a source of light. That there is no evil, but rather an absence of love. He explained it using a flashlight metaphor. If it is dark, you can turn on a flashlight and dispel darkness. But, if it is light, there is no flashdark. You can not dispel light with darkness. People act darkly from an absence of light. This came to me today when I was thinking about my fight with Lyme and the people involved. There are greedy people suppressing information, manipulating the system and hurting multitudes of people. Then there are the beautiful people taking on the fight, giving it a voice, doing the research. And, there are the Doctor's sticking their necks out to help those of us that were not properly treated in the beginning phases and have a challenging mountain to climb because of it. And, there are the beautiful faces of the people in my personal life or those who reach me through this blog. I'm in awe of them and their exquisite hearts and desire to help others. So, I have to look at all the players and know that the people creating the pain, discord and imbalance are doing so because they lack the light. They can alter our lives, but they can not destroy our spirits. They lack a source. We do not. My health issues feel like a microcosm of the world right now. It's going to get a lot worse and uglier before it gets better. But, it will get better.

I saw my Doctor on Monday. So much occured. The co-infection panel came back and I am, in fact, infected with more than just Lyme borrelia. We added 2 new supplements, an auto-immune drug to help with the inflammation, degeneration and joint damage. I have to go get an eye test before I start taking this medication as it causes retinal damage in rare cases. We also discussed the next step in my treatment and the options just ahead of me. I am currently on 2 oral antibiotics a day, several supplements, an anti-fungal to stop any yeast overgrowth from the antibiotics, and an intramuscular antibiotic shot once weekly. I feel icky. I probably spend more time in bed than out of bed. I have a decision to begin to treat more aggressively now. At some point I need to have a port implanted into my chest with a pict line to administer IV antibiotics. This will make me even sicker before it can make me better. Or, I can also add the next antibiotic through more intramuscular shots. The down sides are - they hurt, it would be several times a week and treatment could take longer with IM shots. The up side, I wont feel as awful all at once, the cost is pricey but less than the line, and I will not feel so much like 'a patient'. The port is a surgical procedure and once it goes in, I'll need nurse home care visits to change dressings and flush the line, etc. Ugh, really? A home care nurse? This doesn't really seem possible. If the port and line eventually have to go in, then why not now? And yet, I also want to be gentle with my body. So I am taking the next couple of weeks to weigh the options.

I found out this week that my Doctor is closing her practice. She is doing so for personal and professional reasons and moving to the East Coast. I feel so safe and secure with her and this was quite a blow, but I understand she needs to do this. It made me sad though to hear from the office that the 'hostile medical enviornment in California', the managed care fiasco and parts of this epidemic contributed to her decision. Lyme literate physicians are few and far between, to say the least. I have moments when I wonder if I should move to the East coast, where they have changed laws surrounding this disease and how to treat it. Since it started on the East Coast, that is where there are more specialists, a wider understanding and political foreward movement. We are on the other side of the country, I fear it's going to be years before we catch up. There is a doctor in Redwood City that I could transfer to, but I'm not sure if it feels right to me.

My lovely friend Marlie reminded me yesterday that as one door closes, another WILL open. Having my doctor leave is a blow, but it will be okay. Thank you, Marlie :-) My path will take me to the right places if I am willing to listen and face the challenges. Ultimately we all must trust. Remember, times are tough, but the light outweighs the dark. We are in a time of great contrast personally and worldly. Facing our struggles, decisions and eachother with courage and love will make all the difference in the world. So many people are making a difference in mine.

Anything, just not Lyme...

Today's post is probably going to be a bit scattered. I apologize in advance. It's been a week since I wrote. It's interesting because I think in book and blog form in my mind all day everyday, but cease to find the energy to write. As things happen, I word whatever it is into different sentences, then edit, delete, retype. I can see the words in my mind typing across a page or often as already printed on the pages of a book. That has been the case all my life. I knew as a small child I was meant to write. One of my fondest memories was in 6th grade when a fellow classmate, Clarissa, and I put together a newspaper and had it printed. I remember editing it and deciding how to cut, paste and place the different articles. We also put together a book of poetry and illustrated it. I don't have many fond memories of middle school, mostly moments of feeling awkward and different and fearful imprint my mind. But, I can remember vivid details about those projects. Thoughts I was having, the dried glue stuck to my finger tips, the room on the first floor of the tall, cold gray building on Forest street we worked madly away in. Just beyond the old mis-colored paned windows were picnic benches littered with the popular kids. I dreaded ever having to walk through the courtyard that entertained them all. I felt much better tucked away in the room on the other side of the glass working on our newspaper. I won a writing award that year for one of those projects. Interesting, as I write this, I realize that is the year the tick bit me. I wasn't thinking about that at all when I first started writing just now. But, that right there is a perfect example of how consuming this disease is. It seems to poke it's head into every moment I have in one way or another. It's like being in a peaceful room minding your business and having the door fling open and some, dumb loud, ugly creature babble and wave " I WAS THERE!".... Get out already. Ugh.

If Lyme is not popping into my memories to show me proudly how it's been a huge presence in my life for so long, then it shows it's ugly face in physical manifestations. I'll fall down in the grocery store, stutter in the middle of a sentence, get lost in downtown Pacific Grove where I've lived 20 years of my 34 years on this planet. My hand's will shake uncontrollably, my face will twitch, I'll fidget because I can't get comfortable, my heart palpitates loudly and I am short of breath often, my body "buzzes" and doesn't allow me to sleep. The laundry list goes on and on. I spent hours on the bathroom floor two nights ago doing my own personal rendition of the Exorcist. I had terrible shooting pains through all of my body, was sweating profusely and chilled to the bone, but couldn't leave the toilet to go change my pajamas or get warm. I had moments where I literally thought to myself I CAN NOT DO THIS! What choice do I have? I guess I should have thought I can not do this gracefully. I have to do it.

Some of the most troublesome parts are the mood swings. Some people refer to it as Lyme-rage. It often feels like I've taken a mean or grumpy pill. I don't feel like myself much of the time. I feel angry about things and say things that are totally out of character. As I am saying them, I just want to stop, take a deep breath and close my mouth, but I can't. It feels like someone else is operating my body. I feel like a ventriloquist doll. I often feel like a prisoner or stranger in my own body. It's scary. Days when I'm being awful, I try to tell my friends and family that I'm just feeling "lymey". Maybe it's a neurological thing or maybe it's just from being so sick of being sick and feeling out of control. I don't know.

The more I study this disease the more contradiction I run into. It leaves me feeling helpless. There are doctors pitted against each other, miseducation plagues the internet and the minds of many medical personnel, there is political controversy, someone in each room that seems to have an opinion one way or another on the matter, corruption from government, insurance companies and big pharma at every turn. It is maddening. I had no idea how amazingly iniquitous our system could be. I started reading a book about the lyme epidemic & controversy. Maybe not the best idea. It fills my heart with grief, disappointment and doubt. There isn't much I don't doubt right now... myself, our government, the health care system, the very illness that is stomping through my life, the future, the world. The list goes on and on. I think I may be in the bargaining phase of grief right now. I keep begging for this to be something else. Not Lyme. Not such a controversial disease. Many people are believed to have it without positive blood tests. I have wished for moments that mine weren't so profoundly positive because then maybe I could go back to blaming myself, compensating and adapting to the conditions of my body's changing environment. Then I remember how it has come to this point, where adapting to, was just no longer an option. You can't ignore tumors, large swollen joints, a heart murmur, central nervous system damage, fatigue, mineral deficiency. As one of the doctors said in a documentary I watched, "even if your blood tests present a false negative and you really do have this disease, it still needs to be treated." So that would only add another irritating level. I guess I have to remember 'how lucky' I am that I actually meet the standards for the CDC, IDSA and insurance companies as far as my tests are concerned. Wow, like winning the lottery. The luck I carry :-) It matters though. It matters in the context that when people start spewing their rhetoric about how they've heard chronic Lyme doesn't exist or it's all a scam, I have my blood work to turn to. Apparently many people don't have that. I wonder how people can believe this in the first place. There are 3 stages of Lyme, the third being 'Late stage neurological'. So if there is a late stage phase of the disease, how can there not be a chronic form? Also, the misinformation that Lyme is hard to get and easy to cure contrasts greatly with the fact that they have been spending millions of dollars on a vaccine to market for it. If it's rare, hard to get and easy to treat, why a vaccine? You don't have to dig too far to find the contradictions.

I have never taken the easy road. I suppose it is fitting that I would fall ill with a controversial illness. An illness that needs a voice. I am tough. I've fought worse odds than this I suppose, but somedays I just don't want to do it. I want to just stick to my hospice work and working with the grieving children and the animals. I like giving them a voice. I don't want to be a face or voice for Lyme disease. I don't want to be sick. Or, if I have to be sick, can't it just be something else? I want it to be something that can just sink under the radar, something that is understood or respected, something that has lots of specialists close by to choose from, something not so life consuming, something with an end in sight.

I'm feeling overwhelmed and unsure of what to do. I can't tell where one thing ends and another begins. Which of my symptoms are just Lyme progressing? Which are herx reactions? Which are depression induced? Which are created by power of suggestion? Which are reactions to the drugs I'm taking? I finish today's post thinking that just maybe... I should join a support group before I spin into total insanity.

People

I talked to my brother yesterday and he asked about my blog. I haven't written in about a week. One, because I had a friend in town and was distracted and consumed by that. And two, because I have been struggling over whether or not to write about some of the things I'm struggling over. After a talk with my incredible brother, I remembered that the whole point of this blog is to talk about this experience in a raw way, to show other people what it's like, and to help anyone else who may be feeling the same way. So no topic is off limits. That was the idea. That's the rule here. So here I go, in my discomfort.

Illness of any kind is kind of a weird dichotomy. It pulls some people closer to you while simultaneously scaring others away from you. Some people care and want to know how you are, other people don't care at all and can't be bothered to even ask. This disease is a teacher in more ways than one. It's teaching me about the importance of self care. It's teaching me that I'm worth healing. It's teaching me about limitations. It's teaching me how to be gentle with myself. It's teaching me how to be in pain, but not suffer. It is also teaching me how to decide who to keep in my life and who not to. I have a very limited amount of energy these days. This shines a light on how valuable that energy is and the waste in placing it places unworthy of it. People can be really insensitive. I believe that they really just don't know what they are saying or doing, so I forgive them for it. I have enough on my plate, so a side of resentment doesn't need to stay. But, for sake of examples and sharing, I will share a few moments I've had since getting sick.

• I have had people I really consider to be in my tight circle of friends not even acknowledge the fact that I have been diagnosed with something that is really scary and life altering for me. Or for some, except, by sending me a handicapped emoji.
• I had one friend ask me if you "get Lyme disease from humping deers".
• I had one friend, upon seeing me sick for the first time, immediately reduce me to a clothing size and then express how my "recent weight loss" made them feel fat.
• I had one friend compare my inability to have children to their lack of a boyfriend.
• And, my all time favorite is the friend who, on a day that I was in less than good shape (covered in a Bartonella rash, puffy eyes, limping, my cat was ill with an abscess, I was exhausted, etc., etc.) look me in the face and say "You know Lyme disease is an STD, right?"

The last one is one I really want to deal with. First of all, even if it were, what is the intent on saying something like that to someone who is ill? It played it's role. I immediately felt horrible, overwhelmed, confused, ashamed, scared, worried, etc. Now the truth is that there is some speculation about this concept, but no proof, no studies, no data to back it up. The thought is that often couples get sick, so maybe... But for as many couple who are both sick, there are as many couples where only one person is sick. Couples also go on the same walks, live in the same areas, travel to the same places, so obviously are susceptible to the same bites. Entire families get sick with this disease. Entire neighborhoods. The tick does not have to stay on you for 36 hours, it doesn't have to be a deer tick, it isn't rare and it isn't hard to get. Those are all fallacies. There is thought that other insects than ticks are now carrying the disease, but that is not an absolute. I guess because they have also discovered that Lyme can transmit in utero that there may be other possibilities as well. I called my dear friend Jenn, who also is sick with Lyme disease, on the East Coast and told her how upset I was. She told me that she had a similar experience. While sitting in a chair with an IV in her arm for a treatment, a guy said something very similar to her about it being an STD. She, of course, felt terrible, panicked and contacted her Doctor (A top Lyme specialist in the country) who quieted her concerns and assured her there are no studies that give this thought merit. My doctor, whom of course I immediately contacted as well, said it is a complete unknown and if I'm worried about sexual activity (which I'm not) I should be more concerned about being susceptible to getting something from someone else, since I have a compromised immune system.

I am doing my best to stay strong, but this is overwhelming to say the least at times. For me, that day, I just couldn't add this element to the disease. I just couldn't. It brought up old feelings of shame, inadequacy, isolation, you name it. I suppose those feelings came from childhood. I have worked hard to quiet them. I got bit by a bug. I got poor medical care because the medical community and people are uninformed. I now have a disease that is possibly fatal. That is all. If there is an aspect that turns out to be that I can make someone else sick because of that, I will do everything in my power to be responsible so that no one else ever has to feel this way. Of course, early detection and this is not even an issue, so there's that too. Anyone in my life that I would want to have an intimate relationship with, will know all about me and any concern they should or shouldn't have. I don't need to feel ashamed or dirty or wrong. This disease has a huge potentiality for self blame and doubt WITHOUT this aspect. Years of being told it was psychological, the deep depression it causes, being told the pain is in your head, misdiagnosis after misdiagnosis, everyone telling you constantly 'Well, you look good' when they hear that you are sick (so it must not be real).... it goes on and on. It's a struggle in your head, heart and body to just get through each day. I refuse to take this aspect on as well. As my brother said so eloquently yesterday " Fuck em ".

Remember that people can be careless with their words and actions. It's human nature. It has no reflection on who you are. It's more them showing their own fears through projection. No matter who you are, what you're fighting, or how you 'got' it, each day we walk through these battles and 'dis-eases', we are braver and stronger.

Seeing clearly

It's been a few days since I've written. That terrible episode was followed by some better days. I'm still holding out and longing for a few days that just feel normal, in the mean time every chunk of 'normal like' hours I get, I will cherish and be present for. On Monday, I took a beautiful walk with my parents and took in the beauty of nature. What a gift. When my feet hurt, I took my flip flops off and buried my feet into the hot sand. I would imagine releasing the pain into the enormity of the scenery around me. When my back or abdomen spasmed, I'd stretch and breathe and release. I'm beginning to see that life is a constant process of letting go.



There is something so healing about being out by the ocean or under the trees somewhere. I feel like I can breathe more, like my 'problems' are minuscule in the grand scheme of things. And, they really are. When I turn on the news (which I try not do too often because it's so depressing and fear based) I see what a mess our world is in. People are dealing with a lot more than what I'm facing. Oil spills, natural disasters, cancer, violent children, hate crimes, assaults against children, I could go on and on. But, I won't. You get my drift.
I remember a story my mother told me about a day she was out with one of my aunts. I believe they were in Pebble beach, observing the baby seals. In one direction there were several happy, peaceful seals playing and soaking up the sun. In the other direction there were 2 seals, a mother and a baby. It looked as if the baby had passed away and the mother was frantically trying to push the baby onto shore or 'wake her up'. She was in a lot of distress. My mother, being the bleeding heart that she is, started to suffer with the mother seal. She could hardly stand it. Knowing my mother, she was probably in tears and panicking, ready to leap into the sea and perform mouth to mouth on the baby seal. My aunt saw this, took her by the shoulders and turned her in the other direction where the seals were playing and peaceful. She shifted her view toward the beauty in the scene and simply told her "You are focusing in the wrong direction". I tell this story metaphorically, not literally. I don't think we should turn away from the sadness in the world. I think it is imperative that we face grief, the dark sides of things, offer a hand where it is needed and work to shift the imbalances that plague our world. We should do all we can to help each other and the other creatures of this earth. But, in this case, there was nothing my Mother could do to change the reality of this situation and the events taking place were the events that this mother seal was faced with in her life. So, I see it more as a metaphor. In any situation, no matter how bad, I believe there are always at least slivers of beauty. Even if the beauty is only that it makes us stronger. Focusing on the love, the support, the the human kindness that emerges in crisis can relieve some of the suffering. Pain is inevitable, but suffering can be optional. I am not minimizing people's pain in any way. I'm just saying that shifting perspective can at least lessen it for moments. Especially in situations that we are powerless to change the circumstance of.

When I read about this disease and other people's experiences, it can get daunting. People not responding to treatment, losing sight, being confined to a wheelchair, it goes on and on... There is also the aspect of it all that nurtures paranoia. For instance, the actual history and possible origin of the disease and the way medical politics and corporate greed has altered it's course. To me this is the struggling mamma seal. I choose to focus for this moment on the light that has come shining through the cracks of this dark room I find myself in and it is bright. I'm looking at the seals basking in the sun, so to speak. Never have I been more aware of the amazing people in my life and the capacity of love. I have had a lot of love and support from the people directly in my life and also from others. It's so heartening. I have received a few e-mails on Facebook from acquaintances offering support and kind words. It makes all the difference in the world. I've even received an e-mail from someone who stumbled on my blog and has been experiencing a similar struggle. Alone we can do so little, together we can do anything. Thank you to all of you that have reached out and offered support of all kinds. I love you.

Ivy came yesterday and gave me my second intramuscular shot. Ouch this time. It was worse than last time, but no big deal. I did fall down after, but hey I'm a klutz. Breathing, being next to an amazing friend and an icepack countered the pain. I'm noticing small differences. The neurological things are still present, but seem to be plateauing. I fell yesterday while standing still, but the short term memory stuff has been better. I think so anyway, unless I just forgot. I'm twitching less. I can walk on the soles of my feet in the morning now without crying and the rash has cleared up. The headaches are holding strong and the body pain is sticking around, but nothing I can't handle. I've been using a sedative to get a little more sleep at night and that seems to lessen the "electrical current" that pulses through my body and keeps me up at night. The extra sleep hasn't helped with the puffy, dry and blood shot or glassy eyes, but that's what big Jackie O glasses are for :-). They also help with the light sensitivity. The orange tears have gone to a lighter, more yellow color. Despite a little eye trouble, I certainly feel as if I am seeing more clearly.